Burden of heart failure on caregivers in China: results from a cross-sectional survey

James DS Jackson,1 Sarah E Cotton,1 Sara Bruce Wirta,2 Catia C Proenca,3 Milun Zhang,4 Raquel Lahoz,5 Frederico J Calado5 1Real World Research, Adelphi Real World, Bollington, Cheshire, UK; 2Real World Evidence Center of Excellence, Novartis Sweden AB, Stockholm, Sweden; 3Wellmera AG, Basel, Switzerland; 4Health Economics and Outcomes Research & Access Strategy, Novartis Pharma China, Beijing, China; 5Real World Evidence Center of Excellence, Novartis Pharma AG, Basel, Switzerland Purpose: Family and friends play a pivotal role in caring for patients with heart failure (HF); however, evidence of the impact of caregiving is limited. The objectives of this study were to describe the burden of caregiving on informal caregivers of patients with chronic HF in China.Materials and methods: A cross-sectional survey of cardiologists, their patients with HF, and those patients’ caregivers was conducted. Patient record forms were completed by 150 cardiologists for 10 consecutive patients. Caregivers of these patients were invited to complete a questionnaire.Results: Overall, 458 caregivers completed a questionnaire (mean ± standard deviation age 60.1±10.6 years; 60% female; 77% spouses; 74% retired). Caregivers spent a mean of 24.5 (16.9) hours caregiving per week, and a third reported a reduction in their social activity, time for themselves, or time for family. Caregivers in employment took several days off work in the past 3 months owing to caregiving, sometimes resulting in reduced income. Up to 79% of caregivers reported an impact on their physical or emotional well-being, and 57% reported deterioration in their objective health status. Inconsistencies stemming from differences in the three-level five-dimension EuroQol questionnaire and HF Caregiver Questionnaire were observed for the impact of caregiving on caregivers’ health-related quality of life. Conclusion: Assisting patients with HF is associated with caregiver burden. Addressing the needs of caregivers may help to promote their continued support and improve patient outcomes.Keywords: burden, caregiver, China, health-related quality of life, heart failure&nbsp